Is it your responsibility to disclose genetic conditions to family members?

February 08, 2019 - 3:15 am

By Amy E. Feldman, Judge Technology Solutions

PHILADELPHIA (KYW Newsradio) — A British woman is suing her father's doctor because he failed to warn her that her father had a genetic condition.  

The woman found out her father carried the gene for an incurable, degenerative disease after she gave birth to her own child, who has a 50 percent chance of developing the disease. She sued the doctor for failing to tell her, saying had she known, she would not have had a baby. 

In the U.S., how does the law balance a patient's confidentiality against a family's right to know? 

Under HIPAA, doctors can't disclose medical information without the patient's consent, unless there is an imminent threat to third parties. But genetic information is rarely imminent, and courts have been split on the issue. 

The Institute of Medicine recommends disclosure when irreversible or fatal harm of the relative is highly likely, a patient refuses to disclose it, disclosure will prevent harm, or there's no other way to avert the harm. 

As genetic tests become better and more prevalent, this will become a bigger issue. In the meantime, talk to your relatives about what they know about their health — and yours.